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About Me

I am a below knee amputee. More importantly, I am also Mommy to two boys, a very active 10 year old (Robby) and an mischievous toddler (Timmy). I have learned that being a parent with a disability can create some unusual and sometimes humorous situations.
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Friday, April 26, 2013

Last
Monday I was horrified by the events that transpired in Boston. Watching
the news as the details unfolded, I felt a mixture of outrage, terror
and grief. The reports of numerous amputations on the scene made the
story personal.

It has been heartwarming watching the world
embrace the newest members of the amputee community. Within hours these
individuals were flooded with well-wishes, monetary funds were
established to provide for their after care, and the peer visitor
program was mobilized through the Amputee Coalition. I slept better
knowing that these victims were receiving the best services possible and
that they would not be traveling the journey alone.

As days
passed, my feelings have become conflicted. While I don't begrudge these
amputees any of the services or assistance that they are given, their
experiences are not representative of the average amputee. According to the Amputee Coalition there are 500
amputations every single day in this country, yet the world seems ready
to embrace and support fourteen.

The
manner in which the limbs were lost in Boston is horrific and dramatic,
but the loss experienced is no more profound nor tragic than the other
486 people inducted into the limb loss community last Monday. Since the
bombings, the intense news coverage has exploited every aspect of limb
loss with one exception. It is ironic, yet not surprising, that the one
issue that has been artfully avoided is the very thing that is disabling
the community more than the loss of the limb!

Two individuals
with the same degree of limb loss can have profoundly different
life paths simply because of their insurance and economic status.
Remaining confined to a wheelchair because of inadequate insurance is
becoming commonplace, and this is a travesty. In this country, access to
quality prosthetics is a privilege afforded to the affluent and those with
exceptional medical insurance.

I confront the struggles of
individuals trying to access prosthetic care on a daily basis. I have
supported and counseled grandparents who made the difficult decision to
remortgage their home because seeing their grandson confined to a
wheelchair, due to the family's inability to purchase a new prosthesis,
was too much to bear. Unrealistic insurance caps established to keep
profits high despite further disabling amputees are often exceeded
within the first few years after limb loss. A growing child may require a
new prosthesis annually, forcing the parents to work longer hours and
straining the family unit simply to keep the child mobile.

Under the direction of the American Orthotic and Prosthetic Association
(AOPA), the leading trade group for the prosthetic industry, the major
manufacturers and practitioners have promised to provide quality devices
to all amputees affected by the Boston bombings. A press release
pledged to provide "access to care for uninsured/underinsured amputee
victims of the Boston Marathon Bombing to assure that all victims “will
walk and run again." While I think it is wonderful that these
individuals will never face the lifetime of denials, appeals, mountains
of paperwork and the financial strains of the hefty co-pays, this is not
the reality for the other 1.7 million people living with limb loss in
this country.

The average amputee in
this country would never be able to run the marathon in 12 short months,
not because they wouldn't be physically recovered, but because they
would lack the specialized prosthesis to participate. Sport and
specialized prosthesis are considered "luxury items" by the vast
majority of insurance companies. The other
486 amputees will be forced to apply and scrounge for grants and
private donations in order to return to their active lifestyle.
Inevitably their grant requests will be denied and many will have to
wait for years before finally receiving a specialized prosthesis, if
they are among the lucky to receive one at all!

The
aftermath of the bombings could have been an opportunity to create a
meaningful dialog
about the unequal access to prosthetic care in this country and the dire
need for insurance parity. Instead, the industry has chosen to sweep
the "dirty little secret" under the rug, hiding the unsightly struggles
from the public. Now instead of witnessing the real life issues of life
after a traumatic amputation, the public will be treated to a Utopia
version of amputation life where an individual's potential is not limited by their insurance company.

Prosthetic
parity is the most pressing issue plaguing the amputee community.
Mobility is obtained not only with hard work, perseverance and
determination but also by policy writers and insurance
adjustors. In this country, the opportunity to ambulate with a
prosthesis is not afforded to every amputee. Amputees are being
handicapped not by the loss of a limb but by their inability to pay for
an adequate prosthesis.

Lifetime insurance caps (many times as
low as $10,000) are insultingly unrealistic considering that, according
to the Amputee Coalition, prosthetic costs for a person with a
single lower limb amputation over five years is $230,000. Many policies
have riders excluding bionic and specialized devices, forcing the
individual to settle for a device that is inadequate to meet their
needs. We need to raise awareness about parity issues, mobilize our
resources and in a collective voice scream, "This is wrong. Arms and
legs should not be reserved for the wealthy."

Because no tax
payer money is involved, Prosthetic Parity pretends to receive
overwhelming support from lawmakers. Unfortunately the issue is not a
legislative priority due to the relatively small size of our community.
We have been in desperate need of a rallying cry, an event that would
bring the issue of prosthetic inequality to the forefront so that change
can be effected.

The establishment of this
coalition is nothing more than an attempt to receive good press and
accolades from the American public. 1.7
million amputees will continue to struggle and fight simply because a
few industry leaders lacked the gumption and courage to stand up and
show the world what life is really like when one is dependent upon a
prosthesis. We have traded an opportunity to raise awareness and affect
change for a few pats on the back and fleeting accolades.

Thursday, April 25, 2013

Since Sunday I haven't been able to escape my thoughts about the lady
whom I discovered lying naked in front of her door. While I knew that
something was askew, I have been wracking my brain trying to figure out
what happened. I have been nervous walking down her cul-de-sac since the
incident, apprehensive that I would have raised the ire of the
neighbors by calling 911 while anxious to discover any information about
her and her unborn baby.

Yesterday afternoon as I was walking
by her house, I saw the door swing open and an elderly man came quickly
towards me. He screamed, "Are you the one-legged walker who called 911
on Sunday?" I refrained from any smart aleck remarks and just said yes.
Before I realized it, I heard myself launch into a long winded apology
about causing a disruption.

He interrupted me by giving me a hug.
I learned that the lady has no recollection of Sunday and is perplexed
as to how she ended up naked on her front stoop. When the paramedics
finally got her to the hospital she was semi-conscious and she was in
the throes of a gestational diabetic episode. Her organs were beginning
to fail under the stress, but the medical team acted quickly. A
C-Section was performed and a healthy (albeit premature) baby boy was
delivered. The new Mom is resting, regaining her strength and her
systems are beginning to normalize.

I was so elated to hear that
this story had a happy ending that I practically skipped home. I'm so
thankful that I happened to be walking by her house and that her dog
signaled me to look towards the house. I have no doubt that her canine
friend played a large part in saving her life (and her baby's life as
well!)

I am looking forward to meeting her and her young son. It'll be nice to know her name so I can stop referring to her as "the pregnant naked lady." I
know that she is embarrassed by the incident, but I'm hopeful that a hug
and a plate of chocolate chip cookies will help make our formal meeting
more comfortable. I am so grateful that the outcome is positive. If I
hadn't been walking by or had I not looked up, the situation could have
become tragic. I guess now I'm glad I didn't stay on my couch eating
cupcakes all day!

Wednesday, April 24, 2013

This week marks my blog's fourth birthday. It is hard to fathom that my
adventure in blogging is now going into its fifth year. I clearly
remember that bored Friday night in 2009 when, lacking the motivation to
clean or do laundry, I opened up the laptop and decided to start a
blog. I had no great aspirations about the venture, but it seemed like a
fun idea and way to pass some time. A few clicks later and AmputeeMommy
came to life.

Unsure about the format, the first few blog posts
are disjointed. It took me awhile to get the feel for the format and to
establish my own goals. Once I realized that the blog could become my
vehicle to help other amputees by minimizing the isolation that is too
often experienced, my blogging wings began to fly.

It amazes me
how this blog has become such an important part of my life. It has
become more than writing words into a computer. This blog has morphed
into an expression of who I am and reminds me of who I want to become.
Good or bad, chances are it'll end up in my blog. I have to chuckle
because now whenever I have a bad day or a negative experience, my
friends and family help to lighten my mood by reminding me that "at
least it'll be a good blog."

This blog has taken a lot of time
and dedication. There have been many occasions when I have been sick and
exhausted, yet I've always found the time to publish a post. I often
tell friends that Robby will have the best documentation of his
childhood because I have written about all of our adventures. Someday
his spouse, or perhaps even his children, will read this blog and will
have a humorous and perhaps better understanding of Robby. (Who, in all
fairness, will probably prefer to be called Rob.)

My Mom,
understanding how important this blog has become, began printing and
binding all of my posts. I now have volumes of hard bound copies of the
Amputee Mommy blog, printed in multiple volumes. I love looking at the
bookshelf knowing that all of the colorful books on the shelf are
authored by me!

To date I have written 1117 published posts.
Robby has gone from a toddler in diapers to an elementary school
student. When I began writing I felt lost, unsure and scared about the
future. I am now confident, happy and mentoring new amputees on their
journey. I can't wait to see how the next four years develop! In the
meantime, I think I'll celebrate this milestone with a cupcake!

Tuesday, April 23, 2013

Friday was spent chaperoning Robby and his classmates on their field
trip to the Air and Space Museum. He was adamant and excited for me to
attend which is good because my skipping the field trip was not going
to happen. Since he has been born, I have taken great pains to
reorganize my career so that I am available for chaperoning, assorted
room mom duties etc.. I consider myself extremely fortunate to have the
flexibility to be able to participate in all of Robby's school events,
even when that means I'll be spending the day trying to wrangle excited
6-year-olds in a highly stimulating museum!

Dressed in their
identifying neon green school shirts, Robby looked adorable standing
with his peers. Of course he was standing about 6 inches taller than all
of them, a combination of his being tall and his insistence on wearing
his cowboy boots. Although they were all dressed the same, it wasn't
hard to pick out Robby!

When we arrived at the museum the class
was split into two smaller groups. I felt an unexpected surge of pride
when the majority of the class wanted to be in my group. At first I
thought that their affinity stemmed from my reputation of being a super
cool and fun Momom. That was quickly squelched when I heard a little
girl lobby to be in my group by saying, "I want to be in Robby's group.
He says his mom doesn't have to wait in lines because of her prosthetic.
If I am in her group, I won't have to wait either." So much for my
being perceived as cool. The kids just wanted to reap a perk.

Despite
my ego being leveled, we had a great time at the museum. Robby was
impressed by many of the exhibits, especially the ultra-light plane that
was used to help birds migrate. I thought he would be in awe of the
Space Shuttle, but the bird plane was the class favorite. I am sure we
spent more time reading about and examining the bird plane than we did
the Shuttle.

The class attended a seminar about astronauts and
(thankfully) they were all well behaved. I was certain that Robby would
emerge from the lecture with a renewed interest in becoming an
astronaut. A few months ago it was all astronaut, all the time in our
house. I prepared to be inundated with space questions from my young
little explorers. After trying on space gloves and boots, the group came
skipping out of the auditorium and all wanted to go look at the bird
plane again. To my surprise they were unimpressed by the astronauts.

During
lunch I finally got to the root of the astronaut aversion. The museum
volunteer showed the class an astronaut diaper, which is worn during
space walks etc.. Instead of finding this interesting, the six year olds
found it repulsive. Now none of the previously aspiring young
astronauts want to be "spacemen" because none of them want to wear a
diaper. They seemed to have missed everything that was said after the
diaper!

Despite squelching Robby's astronaut aspirations, the field trip was a success. I had a wonderful time spending the day with Robby and his classmates. I know that someday having me accompany him on a field trip might not be his preference so I plan on making the most of each opportunity.

Monday, April 22, 2013

A few weeks ago I was medically cleared to resume my walking routine.
Although I'm bummed out that I can't return to the gym yet, being able
to walk through the neighborhood has done wonders for my psyche. I have
come to relish the "me" time that meandering through the neighborhood
affords me. I used to feel guilty about walking by myself, but I have
come to realize that I am a better mom and a happier person when I take a
little time for myself each day.

With both boys occupied with
various activities, yesterday afternoon I grabbed my headphones and my
cell phone and headed out the door. It was chilly (only 50 degrees) but
the sun was shining brightly against the brilliant blue sky. It didn't
take long for me to become lost in my thoughts as I walked along my
normal route.

Turning down the final cul-de-sac, a large dog
barking brought me back to reality. I looked up, expecting to wave or
exchange pleasantries with a neighbor. At first I didn't see anybody and
I continued with my route.

The dog just didn't stop barking! I
quickened my pace as I walked by the house, hoping to move out of his
territory to stop the yapping, but as I looked over my shoulder, I saw
something that literally stopped me in my tracks.

It took a few
moments for me to fully absorb what I was seeing, but soon it became
clear that I was not mistaken. Lying by the front door of the home I saw
a completely naked, extremely pregnant woman. She was curled in the
fetal position, but there was no doubt that she was not wearing any
clothes. Her arm was pink from the sun, but she seemed oblivious to the
large dog barking in front of her.

I immediately felt a surge
of panic. I didn't want to be a nosy neighbor, but the entire situation
seemed unnatural. I couldn't come up with one reason a woman would be
lying, naked and pregnant, in front of her front door. She wasn't moving
and I became nervous.

The large dog kept me from approaching;
the last thing I needed was to be mauled by an unknown canine! After a
quick call to both my Mom and Scott, it became obvious that I needed to
call the police. Something wasn't right, and this woman might be in
trouble. I made the call.

Before I made it home, I was passed by
police cars and an ambulance zooming down the street. Scott hopped on
his scooter to try to gather information. He saw her propped up and
covered with a blanket. After about 20 minutes the ambulance left, the
sirens and lights providing a clue that she was inside.

I have
no idea what happened to her or why she was lying naked outside. I've
been trying to rationalize what I saw, but I can't for the life of me
think of a benign reason she would be in that situation. Something was
obviously wrong, and I hope that she is okay! Although I hate calling
911, I know that it was probably the best thing I could have done in
that situation.

I have been shaky since I stumbled upon this
lady. I am worried about her condition and continue to wonder why she
was outside naked. So much for my nice relaxing walk. I would have fared
emotionally better on the couch, eating a cupcake.